Dysphagia.

That is the fancy word for difficulty swallowing...it is also happens to be KayTar's brand new issue, apparently.

Yesterday, I noticed that she was chewing up a bite of her solid food, then spitting it back out. She did it at snack and at dinner, and both times she stopped eating afterward. She said the food was getting stuck in her mouth. I asked her what she meant and she said she was spitting it out because it wouldn't go down her throat. I asked her about her meals at school (breakfast and lunch) for the past couple of days and she told me the same thing about each of them, she tried her food, chewed it, but spit it out because it wouldn't go down. She was with my mom during the day on Monday, so I called and asked if she had seen KayTar eat any solids. She said she had given KayTar chips and guacamole, but she couldn't say whether she ate any chips or just the guacamole (which is a pureed consistency). I also talked to the pediatrician, who said that if it continues to be an issue, we'll need to see the ENT/get an upper GI with a swallow study done.

I emailed KayTar's teacher and school nurse, so they could keep an eye on her at meals. Although I think it is very unlikely because of how cautious KayTar is with food, I'd hate for her to choke and not have mentioned this issue to anyone in advance. At breakfast, the teacher sat with her and encouraged her to try her pepperoni, which she did...but she picked it back out of her mouth because it wouldn't go down. At lunch, she successfully ate a few bites of garlic bread and a pepperoni. At snack, she tried pepperoni again, but it got stuck and she spit it out. After school, she wanted to try bacon bits, so I gave her one and it went down fine...but the subsequent ones got stuck and then she was done. Trying to get some more information about what exactly is happening, I gave her some options to explain what might be happening:

1. Was she trying to swallow, but the food was getting stuck?
2. Was she swallowing, but then the food was returning to her mouth? (she has reflux)
3. Was she chewing her food, but losing track of where it was in her mouth, causing her to spit out her food? (she seems to only eat with one side of her mouth, which made me wonder about this)
4. None of these...something different that I didn't mention.

She maintained that she was TRYING to swallow, but the food was getting stuck. I'm perplexed. I don't think it is behavioral, because these are foods she likes. She could simply says she was done and no one would make her eat another bite. She's never mentioned anything of this sort before. She is fine with liquids and she ate a stage 2 jar of peas this evening without issue. I'm hoping it resolves itself soon, but I don't know how likely that is...probably about as likely as her participating in a swallow study. (Seriously, how do they do swallow studies on kids like her? I think there is about zero chance she'll willingly drink the barium and we can't put it in her g-button because that defeats the purpose of a SWALLOW study.)

By Kindergarten...

KayTar isn't eating. It doesn't really matter since we have the ability to give her enteral feedings and she gets all of her necessary nutrition that way, but we still do notice and it--ahem--eats at us.

She has never eaten many carbohydrates, but that list is quickly shrinking. She eats no fruits, no pastas, no cereals, no cookies, no breads...well, on rare ocassions she will eat a couple of bites of garlic bread. Up until recently, she would eat chips, soda, icing, french fries, ice cream, croutons (with all of the brown removed)...not exactly HEALTHY, but still food that she was willingly eating. Most of those are out now. Here's the BIG one, she won't drink her Pediasure by mouth anymore. She is frequently complaining that foods are too sweet.

She favors proteins almost exclusively, most of the foods she will eat are greasy meats...bacon, breakfast sausage (that has been cooked and put back in the freezer to cool), chicken nuggets (straight from the freezer), tuna with mayo, pepperoni. She'll also eat powdered parmesan cheese and stage 2 baby food peas and corn and sweet potatoes. That's about it. But in the last week or two, she isn't eating any of that on a regular basis. Today, she ate a snack size bag of chips. Yesterday, she ate a few bites off of croutons at Olive Garden along with a bit of parmesan cheese. The day before that, she ate 1 frozen chicken nugget. The only thing she is taking with consistency is her glass of Miralax water each day.

I'm not sure WHY she isn't eating many of her "safe" foods anymore or why she is complaining about the sweetness of things. I don't know why she won't drink Pediasure anymore. It seems like she's having a bit of a flare up of her GI symptoms right now...her constipation is suddenly causing intermittent problems and her feeding issues have greatly intensified. She's been surprisingly healthy recently, no fevers or URIs (knock on wood), no issues with severe ketosis or hypoglycemia. There doesn't seem to be a cause for this little flare up, but there it is nonetheless.

When we started all this, years ago, at our first GI/feeding disorders specialist visit the doctor told us, "The goal will be to have her eating normally by Kindergarten." At the time, it seemed reasonable...actually, it seemed a little ridiculous. "OF COURSE, she'd be eating normally by Kindergarten, that is years from now!", we thought smugly. Except that Kinder starts in 3 weeks and she's about 98% g-tube fed, and her food list is shrinking, not growing.

Josh and I were discussing this in the car a couple of days ago and he said, "Well, has anyone ever been able to predict the way KayTar would behave?" And she pipes up from the back seat, "Hey! What do you mean? I ALWAYS behave myself!" That sums it up pretty well, I think. Life with KayTar is often fraught with medical issues and unpredictable outcomes, but there are plenty of smiles and laughter along the way.